What It's Like to Experience a Migraine

The burning tingle of my temples are so subtle, and completely familiar. It’s one of those sensations that I can rarely identify precisely, but that always becomes apparent once it returns from a long, two week absence. My recollection – and every other thought process – is grainy today. However, it seems like it has been a couple of weeks since this burning tingle. Now it is back, so it must be a migraine.

It figures. This week has been an “eight” on the one to 10 scale of stress. Managing a subordinate’s conflict with a work colleague, overseeing an important mid-week event, learning new technology, all while running a department. At home, the constant rumble of kids’ schedules, caring for an aging parent, health worries, money worries, money worries because of health worries….Add in “historic” weather. Cataclysmic flooding. Hours long commutes. The sorrow of friends and strangers thrust from their homes. Familiar surroundings swept away.

I knew, in the far reaches of my subconscious, that this was coming. Too bad knowing it will arrive doesn’t make it any more bearable. And how funny that my normal isn’t “normal” at all. I am used to going partially blind. What would send a good number of people screaming into an emergency department barely elicits more than an, “Ahhhh, damnit!” from me anymore.

Migraine with aura: A migraine that involves visual disturbance….you may see flashing or shimmering lights, zigzagging lines, or stars. Some people describe psychedelic images. It may also cause blind spots in your field of vision.

My “aura” is a searing hot white spot, anywhere from dime to half dollar size, usually in the upper right quadrant of my field of vision. It is incredibly frustrating, because when I attempt to focus on it, it moves. So I end up making myself motion sick trying to “catch” a better look at it. I blink. It resets back in the upper right quadrant. Involuntarily, I try to catch it again. Blink. Restart. Blink….You get the idea.

Sometimes I get lucky and the blind spot is the worst part. These are my ocular migraines. I think ocular migraine and migraine with aura are used interchangeably, but for me, they are two different things. With the ocular migraine, my brain remains intact, and aside from the ridiculously frustrating game of hide-and-seek that I play in my field of vision, I am pretty much okay. My migraine with aura blossoms into a wave of hell that envelopes my entire brain, rendering me largely useless and necessitating recovery time.

So after my rough week, I figured I should prepare. I don’t plan too much for the weekend. I don’t decide to remodel any rooms, no giant
landscaping projects. And I hope for no impromptu, extended family gatherings as I prepare to go partially blind. I have clean sheets on the bed. Laundry is put away – vacuuming can wait.

But when my ice water felt like lava against the roof my mouth…

Did that really just happen? Gulp. Sure did. Why am I drinking fire? I run my tongue around the inside of my mouth. What is going on? Everything feels like it is still in place. Teeth still smooth from the dentist appointment earlier this week. I take another drink.

Yep. I’m definitely drinking fire. What the…

Cut to a sidebar freak-out: Okay. I need to break this down – cold feels hot. Temperature identification. If I just sit and not drink
anything, the roof my mouth feels like its freezing. Does it usually? No. It doesn’t usually feel like anything, dummy. Who notices what the temperature their mouth is? Apparently, I do. Yes. I do – but only when it doesn’t feel normal.

So freezing sensation when it should be 98.6 and burning hot when swallowing cold liquid. What gives?

A cursory Google search provided nothing more that migraines and strokes, both of which had already crossed my mind, but one freaking me out significantly more than the other.

Auras change. Two months ago I saw rainbows for six hours before a mind-numbing migraine curled me up into a tiny ball of sadness.

That time, like the good patient I try to be, I emailed the nurse practitioner in my neurologist’s office asking if auras can change and citing the rainbows. She cheerfully replied back that indeed auras can and do change, and that sure sounded like what had happened, and to, “Please let me know if there’s anything we can do to help…”

….Uhmmmmmm……

So now, with the inability to correctly note the temperature of anything I consume, and the late hour, I opt for text messaging my two closest friends. Lucky for me, but sad for them, they are both nurses with backgrounds in neurology practices. Thankfully, both are now accustomed to my insane bodily reactions to stress, life, gluten, allergies, you-name-it, and at a minimum, humor me with honest and sincere responses. Between, “Yes. Heard of that before,” and, “Definitely could be a migraine,” I settle on the most obvious culprit, unwilling to drag my sorry butt into an ER at 9:30 on a Thursday evening.

Pop my evening pills – wash them down with ice-cold lava, and here’s to hoping it’s all a distant memory on Friday!

I woke up this morning and immediately felt the burning tingle. Funny that I felt a little relieved, and even smiled as I grimaced and groaned, “Noooo…”

I rose up just far enough to not dump the bedside cup of water down my t-shirt, and took a sip. It felt like nothing. Room temperature water. The burning tingle intensified, the grainy pain zoned in on the right side of my brain, and I picked up my phone. I send a text message, “Migraine wins. Back to normal this morning. Thx ladies.”

Moving slowly, I gather myself as much as possible and start out on another day as someone who struggles with migraines. I was once cautioned by a physician in an urgent care to, “Never operate a motor vehicle while in the midst of or when you anticipate a migraine.” I didn’t even attempt to explain that following said advice would render me unemployed and homeless. But the look on my husband’s face, who had met me there to drive me home after the “magic” shot that can break the migraine, said it for me.

He knew that I had suffered from migraines for so long that I didn’t even realize until recently it was possible to medicate someone prophylactically. He also suffers from migraines, and could sympathize with the pain, the nausea, the clammy, sweaty sensation that takes you just to the brink of unconsciousness. But he also knows that if life stopped every time I experienced this unpleasantness, I would be homebound three to five days a week.

My trip to urgent care came early on in my prophylactic migraine treatment. It was likely too soon for the medications to fully take effect. Since that time, quality of life has truly improved. So much so that when this week culminated in the partial loss of one of the body’s senses, I remarked to my husband that, “I’d had a good little run.”

That’s when I wondered if people who have never experienced a migraine could understand how awful the experience is.

I started trying to note the sensations: the pain over my right eye, the slightly blurred vision, the palpable processing delay, the tinnitus.

I experience sensitivity to both light and sound. The florescent lights in my office are rarely on. Instead, incandescent lamps make my windowless work space just bright enough to navigate. The brightness setting on my computer monitor down to just 30 percent, and the ringer on my phone is at level two. Now if only I could tactfully communicate how much I need everyone in my office to speak no louder than a “level two.”

The head pain feels like knuckles accidentally drug along a cheese grater. Multiple, closely grouped scrapes that creep up the pain scale and then bubble over and around the skull. Eyelids feel heavy, sometimes even swollen. Blinking seems to create unnecessary pressure on eyeballs. Sunlight? Forget it. I’m like a vampire. I will shrivel and die.

Sometimes I can’t even manage to keep my hair pulled back. The tension of the roots being manipulated in a direction they don’t want to go is simply added pain. It all feels like sensory overload. The heightened level of sensitivity makes your body want to shut down. And then the day after (hopefully tomorrow for me) the migraine hangover. It’s as if you haven’t gotten enough sleep – regardless of how much sleep you actually accomplished. Add imbibing in one too many an adult beverage. Not your all-night drinking bender: just the subtle pain of one too many.

If you’re lucky, just a one day hangover will return you to normal two days out. And if you’re really lucky, you might enjoy “a good little run” before unexpected stress builds and the burning tingle returns to your temples. It’s only then that you’ll realize how good you felt when it was gone.